Print Email Facebook Twitter A cardiac-specific health-related quality of life module for young adults with congenital heart disease: Development and validation Title A cardiac-specific health-related quality of life module for young adults with congenital heart disease: Development and validation Author Kamphuis, M. Zwinderman, K.A.H. Vogels, T. Vliegen, H.W. Kamphuis, R.P. Ottenkamp, J. Verloove-Vanhorick, S.P. Bruil, J. TNO Preventie en Gezondheid Publication year 2004 Abstract This study represents the development and validation of a cardiac-specific module of the generic health-related quality of life (HRQoL) instrument, the TAAQOL (TNO/AZL Adult Quality Of Life), for young adults with congenital heart disease (CHD). Items were selected based on literature, an explorative previous study in CHD patients, interviews with patients, and the advice of experts. The newly developed Congenital Heart Disease-TNO/AZL Adult Quality of Life (CHD-TAAQOL) was tested in 156 patients with mild or complex CHD and consisted of three hypothesised subject scales: 'Symptoms' (9 items), 'Impact Cardiac Surveillance' (7 items), and 'Worries' (10 items). Cronbach's α for the three scales were 0.77, 0.78, and 0.82, respectively. Scale structure was confirmed by Principal Component Analysis, corrected item-scale and interscale correlations. Overall, 55% of reported health status problems were associated with negative emotions, which is an argument for assessing HRQoL as a concept distinct from health status. Convergent validity with validated generic instruments (TAAQOL and Short Form-36, SF-36) showed satisfactory coefficients. Discriminant validity was proven by significantly higher scores for mild CHD patients compared with those with complex CHD. In conclusion, the CHD-TAAQOL module together with the generic TAAQOL can be used to assess group differences for cardiac-specific HRQoL in young adults with CHD. Testing psychometric properties of the CHD-TAAQOL shows satisfactory results. However, to detect changes in HRQoL over time, further research is needed. Subject HealthAdolescentAdultFemaleHealth StatusHeart Defects, CongenitalHumansMaleNetherlandsPrincipal Component AnalysisPsychometricsQuality of LifeQuestionnairesSickness Impact ProfileCardiac-specificCongenital heart diseaseHealth-related quality of lifeApneaBreathing disorderCareerChild rearingCongenital heart diseaseControlled studyCorrelation analysisCyanosisDisease severityDizzinessEchocardiographyEdemaEducationElectrocardiogramEmotionExerciseHealth statusHealth surveyHeart palpitationIndependenceInstrumentInterviewMajor clinical studyNocturiaOutcomes researchPallorSocial interactionSportStatistical significanceValidation processWorkX ray To reference this document use: http://resolver.tudelft.nl/uuid:825a0efa-d700-4a8b-a721-2768ebb12069 DOI https://doi.org/10.1023/b:qure.0000021690.84029.a3 TNO identifier 277388 Source Quality of Life Research, 13 (4), 735-745 Document type article Files To receive the publication files, please send an e-mail request to TNO Library.